Hip Hip Hooray

  

So, here's the thing, y'all.  MS is a rare disease. Just having MS makes us special. Special in the "you won the incurable disease lottery that affects only 2 million people GLOBALLY," way, NOT special in the "you hit the actual lottery" way. Unless you did win the actual lottery, If you did, that's amazing and awesome! But since you're reading this blog, I'm going to guess you didn't win the lottery that gives you money.

Yes, we could look at the bright side; MS isn't fatal. That’s pretty much where the bright side ends and the dark side begins. 

The reality of living with MS almost makes one angry when one hears all the euphemisms and unsolicited (however well-intentioned) advice. 

After living with MS for over 17 years, I KNOW I have a fairly mild case. I'm still walking and doing things on my own power. My worst symptom is still the MS fatigue. MS fatigue is not a simple, "I'm tired, I'll take a nap". Oh, wouldn't it be fabulous if sleep took away the fatigue? I've heard (and given) many explanations of the fatigue we experience. No one who doesn't have MS really understands, though.  And that's okay. I think the only way to really understand MS fatigue is to experience it, and I wouldn't wish MS on ANYONE. 

My biggest complaint about having MS is that when you experience something new, everyone (myself included) assumes it is related to the MS. Even my neurologist, who I adore, treated me for a flareand ordered an MRI when I first told her what was going on. All the subsequent members of the medical community who I saw for this operated under the presumption that I was having a flare. 

Not until I had an x-ray months after my initial complaint did they discover the true cause of my problem. 

You see, I had a visit with my primary care provider (who I also love, she's amazing) and she referred me to a chiropractor. I have a wizard for a chiropractor, and I made an appointment with him.  After a few visits, he told me it was a nerve issue. I shared that with both my neurologist and PCP. They concurred and presumably the nerve was inflamed because of the MS. A few visits later and the pain wasn't completely gone. That was highly unusual. Like I said, he’s a wizard. 

I had a follow-up with my neurologist. My MRI showed nothing that wasn't previously noted, no enhancing lesions, nothing that pointed to the nerve problem. I still have a black hole in my cerebellum that they are continuing to watch. 

My neurologist referred me to a physiatrist. No, not a psychiatrist, a physiatrist. What is a physiatrist you ask? Don't feel awkward, I didn't know either.

https://www.aapmr.org/about-physiatry/about-physical-medicine-rehabilitation/what-is-physiatry

I had the visit with the physiatrist. She said I would need PT but not until we got my pain under control.  She prescribed a compounded topical pain reliever. Then, almost as an afterthought, she did an x-ray.

I had my medicine filled and diligently followed the instructions. Waiting (hoping) for the relief it promised. There was none.

Some time later, I got a call from the physiatrist’s office. PT was not in my cards. Small wonder why the topical medicine wasn’t working. I have “prominent osteoarthritic degeneration” in my right hip. So that was why the muscle relaxers weren’t working (except when I took some before bed, I could get a good 5 hours of sleep). That is why the ibuprofen wasn’t working, and that explained why the chiropractor didn’t help.

They called to schedule me for an ultrasound. Apparently, they can use ultrasound to deliver pain medicine and cortisone. It's supposed to something like miraculous as far as the relief it brings. They also told me to schedule a consultation with an orthopedic surgeon.

While at this ultrasound appointment, I asked the doctor how I could have gone from 0 to 100 as far as loss of mobility and pain. The doctor said by the looks of my x-ray, this has been going on for years, at least 5 years. I asked him what I could expect.

“If this treatment provides pain relief, we can prolong the surgery”.

What, what? Surgery?

“Hip replacement. Your decision will be complicated. Replace it now, then probably replace again later. The question would be if we can give you enough relief to prolong the surgery. There has been success with stem cell therapy, but that’s not covered by insurance. It’s about $40,000.”

I liked that he didn’t mince words. In other words, though I hated the message, I liked the delivery. I called a prominent ortho center here. The first appointment they had was March 28. I took it.

Then I got worse. I didn’t think I could get worse without breaking my hip, but boy, was I wrong. So very wrong. I have not gone to a store in months. I barely leave the house. I use a cane for support, especially after my leg gave out twice in the house. My resting pain level is a 4 or 5. Without warning, I will get a jolt that’s about a 25. It truly makes me cry out. I realized there was no conceivable way I would make it to March.

I called another orthopedic center in my area, and I have an appointment for Tuesday morning at 8:00.

Now you know essentially everything I know about my latest adventure.

To loop back to the beginning, not everything is caused by MS. I had somewhat forgotten that. I never dreamed I had degeneration in my hip. Since finding out, I have been replaying the past few years, trying to remember ANY hip pain. I still don’t. I’ve been thinking back, trying to remember any injuries. I don’t. In all, I saw 5 different doctors trying to get relief. I didn’t mention the doctor of Chinese Medicine I saw. Yes, I went for acupuncture. That’s a different post for a different day.

I’ll probably post an update when I have answers.

Until then, keep advocating for yourself. While MS did not cause this particular chapter, I never stopped seeking answers and relief. If it feels different from your normal, have it checked, checked, and rechecked if necessary.